VHI Women's Mini Marathon 2017

First Seedcorn Funding Programme Launched.

In collaboration with the Cystinosis Research Network and the Cystinosis Foundation UK Find out more...

Cystinosis Foundation Ireland was founded in 2003 as an Irish registered charity, number CHY15517. It is an all volunteer, non-profit organisation dedicated to raising money to fund research into cystinosis in Ireland and all over the world. A rare disease knows no borders. We also reach out to families of newly diagnosed children to offer our ongoing support and assistance.

In 2015 we changed our name to Cystinosis Ireland and in line with new regulations now use the Charities Regulatory Authority number CRA 20053796

Our main four aims are still the same as when we were founded:

Research Support: The research we fund focusses on understanding the causes and progression of the disease, as well as finding new therapies. Our ultimate aim is to one day find a cure.

Support:There can be a sense of isolation when a rare disease is diagnosed. Our charity's founding members have experienced this and ensuring new families know they are not alone is our priority. For both our existing members and adults with cystinosis we offer support on an individual basis. Through a philanthropic donation we have been able to offer, for example, a grant for assistive technology and access to information about support workshops/conferences for families.

We are open and willing to listen to the needs of all the families who live with Cystinosis. If we can help, we will.

Provide information through various media. Our internet platforms are a valuable source of information and support. Through our website and social media we provide information about the disease and the latest news, keeping everyone up to date on our research projects and all fundraising events.

Education & awareness In common with many rare diseases, very little is known about cystinosis in the public and even the medical professions. Awareness raising and education is an important aspect of our work.

Cystinosis Ireland are proud to announce that we have now completed our registration and submission as required by the new Charities Regulatory Authority (CRA).

The CRA is Ireland's national statutory regulatory agency for charitable organisations and was established on October 16, 2014 under the terms of the Charities Act 2009. It is an independent agency of the Department of Justice and Equality.

To view our profile, please visit the CRA website at the below link, click into the “Register of Charites” tab on the left hand side, click into the “Click here to enter the Register of Charities” link at the bottom of the page. From there you can search for “Cystinosis Ireland” and find out all about us again. The CRA website also provides much more information on Irish charities and is now arguably the most important regulatory structure that Irish charities must be in compliance with.

Many charities are still in the process of completing their submissions and hence why we are delighted to have this process completed. We strongly believe that the charity and not-for-profit sector in Ireland needs proper regulation and the highest standards of conduct and we believe in being fully transparent in what we do, what we stand for, how we raise money and importantly what we do with our donor’s money.